Living with Neurocardiogenic Syncope

I have been debating doing this post for a while, and every time I start I erase my writing and stare at a blank page.

I didn’t know whether to share my story or not, but I thought that for one I’d like to know if anyone else out there is going through the same as me and two I wanted to let other people know they aren’t alone either.

Invisible illnesses affects so many of us and yet to look at us we look like a rather healthy bunch.

My story started at about the age of 10, when I suffered from blackouts. Anything could set me off, getting too hot, standing too long, being tired and exerting myself just a little too much.

For years these blackouts carried on and doctors blamed it on hormones and growing up and still they didn’t stop. People often reported that my whole body would shake as I fell to the ground and I would come around confused, exhausted and in shock.

As time went on I just lived my life as a ‘fainter,’ the dreaded friend who is the life of a party until she’s too tired and feels a bit dizzy and has to go home.

The days when I felt bad, I felt really really bad and struggled to do normal everyday things. Have you ever felt so exhausted that you feel like your body doesn’t work anymore? That was pretty much my daily struggle.

When doctors consistently blamed it on hormones I started to worry it was all in my head and started to question myself, until about 3 years ago when I went for a routine mole removal on my leg. As the doctor was finalising the procedure I felt a little dizzy and fainted. I came back round laughing and feeling a little silly until I went into another faint, however this time I threw my head back and blocked my wind pipe. They called a ‘crash’ team to the “minor ops” unit and a team of doctors to try and bring me round, as I had stopped breathing and gave everyone, including myself a huge scare. When I came round I was in such shock I felt like I was part of a movie set, the only way I can describe it is feeling like someone was operating on me whilst I was still awake, but no one could tell, like you see in the horror movies.

I came around to two faces I didn’t recognise and dazed and confused I screamed for them to let me go and called out for the familiar face of my mum.

You see, when I have a black out, I lose my whole surroundings, I lose the feeling of who people are, what I’m doing at the time, the only people that makes me feel 100% are my mum and dad. Theyre the people that have stayed up with me through the night as I’ve seizured and moved in and out of consciousness throughout the night from coming down with a normal sickness bug, the ones that have been relegated to the spare bedroom to the un-comfy bed so that the other can keep an eye on me when they have work the next morning and they are the ones who’ve held my hand through endless appointments of not knowing what was going on and they’ve made everything ok.

After the hospital incident we decided enough was enough and went back to the doctors which was when the endless tests began. If you’ve ever had a tilt test you’ll feel the mutual pain and anxiousness of this hated test. You are basically strapped to endless wires and machines, and lay on a leather bed and strapped in with Velcro straps. It was the most bizarre of tests which I was told would take half an hour to an hour… And yet only lasted 2 minutes before I fainted, however it did find the answer.

The answer is that I suffer from Neurocardiogenic syncope. It is a condition which affects people at different levels of seriousness and affects people in different ways. In normal language Neurocardiogenic syncope means that when symptoms occur my blood vessels expand, and blood pools in bottom of my body and therefore less blood reaches my brain, meaning I faint. As everything starts to shut down, my body shakes itself awake again. (Hence all those worrying shakes)

I know this is a really long rambley post, but what I really wanted the aim of this post to be was that other suffers know they are not alone. Also as a kind of thanks to my parents, keeping an eye on me through all the worrying tests, appointments and answers.

I’m now on steroids to control it and they are less severe than they once were, however the illness will be with me for life. I have questions that are still to be answered, my condition means that simple things that I once took for granted like having a child have become a challenge and it has changed things in my every day life.

Whilst the illness isn’t life threatening (unless of course I faint somewhere with no supervision, I don’t take baths in the house alone anymore, see simple things we take for granted) it doesn’t make it any less hard to live with and hearing misguided comments such as “you don’t look Ill” & “you can’t always be Ill” can sometimes be disheartening.

I think the whole message I’m trying to get across aswell is that people with invisible illnesses are sometimes mis judged. I spend most days tired, Ill, exhausted, dizzy and with a constant feeling of a hangover and yet to look at, I seem perfectly fine. I try to live my life happily and as normally as possible, but just remember the next time you see that young girl on the bus, not give up her seat for the old lady. She might not be being ignorant, she might just really need that chair.

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Yes, I to have an "invisible" illness – I suffer from painful bladder syndrome (otherwise known as interstitial cystitis – it is not normal cystitis). I to had to go for tests after tests to try to find out why I was in constant pain and why I needed the toilet up to 26 times per day (8/9 of these during the night making for no uninterrupted sleep). When diagnosed the next bombshell was – no cure. What works for managing the illness on 1 may not work on another. So began a series of trying this that and the other… Often intrusive procedures and taking 19+ drugs daily. I lost my job, I had to take my MSc as a post grad cert I was in bed most of the time either in agony or out of it on pain killers. I didn't feel I was a mother to my children or an equal to my partner … I felt I was nothing. So set in another invisible illness – depression. After 4 years and as many specialists 1 suggested trying Botox injections into the bladder. It worked thank god! I have to have it every 9 months but often this turns into 12 months due to all the faffing on NHS so I am left in pain for 3 months. I'm actually waiting for a date for my op at the moment and as I write this I am in the bath as the agony was too much to lie in bed despite having taken 7 tramadol. Sorry for long comment, but thank you for writing this post. When I have my makeup on and I'm not feeling too bad, nobody would think there was anything wrong with me. But I can't get a job as I would be constantly phoning in sick for 3 months every year until the NHS provides a back to back service. I'm sick of being sick! I hope you have managed to come up with a workable way of living with your condition. I know it's not fun – take care xxxx Andrea

Thanks for sharing your story with me Andrea. I hope the NHS get you sorted so that you can control it in the best way. It sounds really hard to deal with. Thanks for taking the time I read this post. Take care xx

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What She Did

Established during 2013 by Beth Williams, What She Did was borne from the idea of sharing the latest goings on of a twenty something navigating the world. What started as a blog about food, drink and venue openings, soon blossomed into a passionate love affair for beauty and has grown ever since.